HOW CAN I HANDLE THIS BETTER?

Topic:

Hello, My friends call me blue :) I am epileptic. I started having seizures as a baby and stopped having them at 14....until the day at work when I was 27 when it started again out of nowhere. I am now 35 and take Tegretol XR every day to help battle the seizures. I am up to 1000 mg. a day of the Tegretol and still have the seizures. They are controlled a lot of the time but I continue to have days like this last Monday where I had three in one day. One of which was at work. I tend to feel very upset when the seizures happen and tend to withdraw emotionally from everyone around me. I think because I am a bit embarrased to have people see me so completely out of control. I am so emotionally spent after a seizure...let alone 3 in one day. The sore muscles, bruises and embarrasment. I get so frustrated with the illness and the fact that with the amount of medication I take my memory is almost completely gone. I won't remember what I did 20 minutes ago. I will tell my husband the same thing three or four times in one evening. He is very understanding and so patient and is always there to help me when I need him. I still feel so inadequate and I guess that now as an adult I am handling the epilesy worse than I handled it as a child. How do I get over the frustration of not being able to change this and how can I feel like a "normal" person instead of such a freak. I would love to get the chance to get to know others like me and any secrets they may have on handling epilepsy and not feeling so helpless. You may also reply to blues21@sbcglobal.net

Comments

Hi blue,Sounds like you are having a tough time. What kind of seizures do you have? Have your seizures been uncontrolled since age 27? Have you noticed any patterns to your seizures? (time of day/night, time of the month, certain foods)I can definitely understand and relate to how you're feeling emotionally. I've felt the same way many times. Honestly, the only thing that helped me overcome those feelings were to get my seizures under control (with the exception of a few breakthrough seizures here and there) and stay on the lowest possible dosage of medication. Yes, my memory stinks. And I'm sure to remind people how bad my memory is: half-jokingly. My husband has been terrific, but sometimes even he has those moments, "You don't remember??". Anyhow, I'm not sure if I've helped you or not (I hope that I have). Feel free to e-mail me: hmoe3@excite.com If I can get answers to those questions, I might be able to give you a more specific response. Cheer up, blue, you can get through this :)Heather

Thanks Heather.I have grand-mal seizures and since the seizures began again I have been on just about every anti-seizure medication there is. The one that does the best in controlling the seizures is the Tegretol XR. However, in order to get the seizures somewhat controlled I have a daily dosage of 1000mg. I have not noticed any patterns or specific things that bring the seizures on. Blue

Hi Blue, Your letter struck a nerve. My seizures were hidden, by that I mean they were there, in my sleep or in my room, always while nobody was there to see them until I was 14. Up until that point, the bruises, bit tongues wet beds etc, were confusing and embarassing. I hesitate to mention the damage to my room which, of course, resulted in punishment. (Live and learn right?) It seems that my seizures are either nocturnal or "on awakening". It doesn't appear to matter whether it's a good night's sleep, a short nap or simply dozing off and waking right up. For that first hour, I'm in danger. The reason I'm telling you this, is it took me twenty years to notice the pattern. The doctors never did. I've adapted to this "danger zone". I don't leave the house for that first hour after waking up. Most of the time, I stay in bed reading.Your question how do you handle it better... I wish I could tell you the perfect answer. Unfortunately, that doesn't exist. Why are you embarrassed? You have no reason to be. My reason in the beginning was because I was "diagnosed a bedwetter" and "just lazy". The doctors all said that there was nothing medically wrong with me.The first thing I want you to do though is to get it into your brain that YOU ARE A normal person. Anyone who says otherwise is living in the dark ages. Anyone who makes you feel uneasy or embarrased should be embarrassed themselves. This is part of the problem with "hidden disabilities". When they are seen, those of us who are stuck with them are supposed to feel inferior. We're not. Put your embarrasment away for when you need it. Having epilepsy is no reason to be embarrassed. What has helped me to deal with this is a warped sense of humor about it. I know it sounds crazy, but please try to remember, I've been dealing with it for over 30 years now. Also, I was lucky. My first neurologist was also a psychologist and he was NEVER too busy to talk to me. There is no shame in asking for professional help to deal with a problem like ours. Face it, we didn't do anything to bring it on ourselves, nor would we wish it on anyone else. This is something you might look into. It doesn't mean you're crazy. I haven't been in the position of having 3 in one day (that I remember anyway) I know what it's like to have the things on consecutive days. But that can't be anything near a draining as the other. Don't let your epilepsy control you. You have epilepsy. Epilepsy doesn't have you. Your seizures will be brought under control. There are too many possible medication combinations for this to not happen. I myself was doing okay with Dilantin alone for years, but just okay. The addition of Topamax 3 years ago turned the tide. It sounds like your family is supportive which is a plus. Remember that you're in good company. Look back through history and see how many famous and brilliant people shared our problem. The key word there would be "brilliant". ;) Basically, keep yourself healthy, laugh when you can, cry when you must and live life to it's fullest. Embrace your family and take an active part in your treatment. It's your brain. You have the right to know what's going on in it. Good luck.Call me bubba

Bubba,Thank you for the term "Hidden Disabilities"! I haven't heard that before. Did you coin that one yourself? It is nice to know other people experience the same thing. I have more than one illness. Back when I was in real bad shape from bi-polar disorder, I felt like having a t-shirt made that said something like "I have a mental illness. Don't expect me to be able to handle what you can." It was frustrating that people couldn't see my limitations like with a person in a wheel chair.My own warped sense of humor caused me to laugh when you assured Blue she wasn't crazy. Because I can't claim that same assurance for myself. I AM crazy! Certifiable, in fact. But even that is not the end of the world or one's life. Once we found the right meds and I started working in an artistic profession, I became merely "interestingly eccentric"and got my life back. And a very full life it was until this new problem started. Blue, I was saddened when I first read your question. Because with all my years of experience with debilitating illness and medications, I had no advice to offer you that didn't sound like a cliche. You would think it would be easier for me the second time around since I already know the drill, but I think I often struggle just as much emotionally as with my first illlness. I have the most wonderfully supportive husband and Jesus in my life. It doesn't get any better than that. Some days I am able to have joy in spite of my circumstances, other days I feel sadness, despair and frustration because I miss doing the things I love. On days I am experiencing physical pain or discomfort, I cry a lot. You wanted to know how to handle this better, but I have come to the conclusion that I can't handle this at all. Only God can. I find my comfort in remembering that He is in control of my life and always hears me even if I can't always hear Him.

TroubleCat,I wish I could take credit for the term. Unfortunately, however, I believe I picked it up while studying the Americans With Disabilities Act, or The Family and Medical Leave Act or labor cases brought under the acts. Before I learned the "facts of life" so to speak, And believed that there were laws that protected us from employment discrimination because we have Epilepsy, I was VERY active in my union. I guess what I'm saying in my long-winded manner is that if I remember correctly, it's a (forgive me) bureaucratic term. But, if I do remember correctly, knowing bureaucrats, they may have "borrowed" the term. LOL.Bubba

USMALE has some good advice. We at epilepsy.com don't like to say that a person is "an epileptic" --- you are just a person who happens to have epilepsy. It is only a small part of who you are. Keep exploring your treatment options. Read the "Living with Epilepsy" section of epilepsy.com and perhaps some good books. There's a list of them at http://www.epilepsy.com/epilepsy/epilepsy_books.htmlThe "Brainstorms" series, edited by Dr. Steven Schachter, may be particularly helpful if you want to get to know others with epilepsy.

Hey Blue, you have found a very loving place to get advice and support. I often wish there was a way to meet the many people whose comments and advise help me keep my chin up. Hang in there and welcome to the community! ;-) Mersix